Caregivers are the people who quietly hold families and systems together. Parents, siblings, partners, and friends who provide daily care to loved ones with complex needs. For families supporting people with neurodevelopmental disabilities (NDDs), caregiving can be deeply meaningful and equally demanding, with high rates of anxiety, depression, and burnout documented across the field. At CAMH, researchers, clinicians, and caregivers are working together to ensure that no caregiver is left behind.
From lived experience to collective need
Caregivers are diverse, bringing a wide range of identities, perspectives, and experiences to their roles. Caregiving is shaped by culture, language, family roles, gender, neurodiversity, and access to services. What many caregivers share, however, is a sense of isolation and the feeling that systems were not designed with them in mind.
In response, CAMH researchers, clinicians, and caregivers have come together to recognize caregiving as a collective experience — one that calls for collective solutions. These insights have informed an approach grounded in co-production, where caregivers are not just participants, but leaders and partners in designing, delivering, training, and evaluating support.
How research is helping the helpers
To respond to the mental health needs of family caregivers of people with NDDs, a multidisciplinary team of clinicians, scientists, caregivers, and trainees co‑developed Caring for the Caregiver: Acceptance and Commitment Training (CC‑ACT). CC‑ACT is a group‑based intervention rooted in Acceptance and Commitment Training, designed to help caregivers build coping skills, reduce distress, and improve overall well‑being.
What makes CC‑ACT distinct is how it is delivered. Groups are co‑led by trained caregivers and clinicians, intentionally blurring traditional boundaries between “provider” and “recipient.” This model reflects a core principle of the program: caregivers hold expertise that is essential to effective care.
To date, the team has trained more than 100 caregivers and 150 clinicians from across Canada to deliver CC-ACT and it has been offered to hundreds of caregivers around the country. This demonstrates both the feasibility of this approach and the impact for families navigating NDD‑related care.
“The power and impact of partnering with parents and siblings to co-design and deliver the CC-ACT program is essential to its success.” said Dr. Johanna Lake, Scientist at the Azrieli Adult Neurodevelopmental Centre. “We hope this partnered model inspires other programs to think about meaningful ways to involve families in the development of services with and not for them.”
The research underpinning CC‑ACT shows that caregiver‑focused interventions are foundational, rather than an afterthought. Supporting caregiver mental health strengthens families, improves sustainability of care, and ultimately benefits people with NDDs themselves.
However, evidence alone does not guarantee access.
Barriers to access—and the need to scale
CC‑ACT has faced real‑world challenges. Many caregivers who could benefit most from the program encounter systemic barriers, including language differences, stigma around mental health, limited institutional support, and inequities affecting under‑served communities.
Black caregivers, fathers, neurodivergent caregivers, transition-age siblings and Francophone caregivers are among those who have been historically under‑represented in caregiver interventions. Addressing these gaps requires intentional adaptation—not just wider dissemination of an unchanged model.
“It has been very exciting to think about who is not in the room when it comes to CC-ACT delivery, and to partner with people outside of our walls to explore ways to further tailor what we have developed so that it benefits more families.” said Dr. Yona Lunsky, Scientific Director of the Azrieli Adult Neurodevelopmental Centre. “As a sibling, for example, I need to connect with other siblings whose experience is closer to mine. The words we use and the complexities we navigate are not the same as those described by parents.”
Long‑term sustainability also depends on embedding caregiver support into systems through policy, funding, and national training models.
Where we’re going next
In 2025, this work entered a new phase with the launch of “No Caregiver Left Behind: Addressing Accessibility and Sustainability of an ACT Intervention for Family Caregivers of People with Neurodevelopmental Disabilities,” funded through the Kids Brain Health Network and Brain Canada.
The $599,864 project which includes a $199,999 contribution from the Azrieli Foundation —is co-led by Dr. Johanna Lake (CAMH) and Dr. Kenneth Fung (UHN), with support from Dr. Brianne Redquest, Dr. Avra Selick, Dr. Yona Lunsky, Dr. Kendra Thomson, Dr. Claire de Oliveira, Lee Steel, Jodie Siu and Jocelyn Tan with support from national collaborators and partners. The project focuses on two parallel goals:
- Improving accessibility by working with local teams to adapt CC‑ACT for diverse, under‑served caregiver communities.
- Ensuring sustainability through regional and national collaboration, policy recommendations, enhanced training models, and advocacy.
Community partners including Holland Bloorview Kids Rehabilitation Hospital, BC Centre for Ability, Scarborough Centre for Healthy Communities, Giant Steps, Siblings Canada and the Canadian Centre for Caregiving Excellence will support this next stage of implementation.
A collective commitment
This work serves as a reminder that caring for caregivers is not optional; it is essential. The goal is simple and ambitious: a future where caregiver mental health support is accessible, sustainable, and embedded wherever families need it—so that truly, no caregiver is left behind.
To learn more about ACT visit https://www.actforcaregivers.com/
